Blip time.....well for my mindset anyway!
I got my paraprotein results yesterday (my bday too!) and they have come down but have only come down to 27. I don't know why, but despite the doctor saying they probably wouldn't keep coming down so fast, I had really banked on them coming down a bit more than they did. It was a bit of a downer hearing that they hadn't.
I try so hard on here and in general to be positive about stuff, but found myself getting a bit low yesterday. I suppose I'm a bit scared of what might happen. I feel like I'm dealing with the chemo quite well so far, so in my head, I'd felt that I could cope with the next couple of months and the transplant....but if it doesn't work so well (and I know I'm getting ahead of myself here!), and I have to go onto Velcade, I just don't know how that will affect me, the kids etc. Nick told me off for trying to second guess it all yesterday. He's right too (I so so hate admitting that!!). Really I just need to take a chill pill, wait till the end of my 4th cycle and see what they say. But it is not me to do that...I want to plan, I want to know when I'll be in hospital, I want to know if we can book a holiday, I want to know what childcare I need to sort!!!
People on the Under 50 site have been great though...a couple of people have mentioned that sometimes a quick remission, can lead to a quick relapse, and God knows I don't want that. Also, (and I may be clutching at straws here!), my paraprotein was pretty high to start with, but with a relatively low figure for my bone marrow....so it could be that I don't need it to go so low for them to give me a transplant. And I suppose the other thing to think about is that perhaps every month I don't have to have the transplant is just another month....another month with no risks, another month towards a 'relatively' healthy lifestyle, and another month towards new treatments being found......but please, no-one else is allowed to say that to me!!! Only I'm allowed to talk about the possible cures for the future!
I'm dribbling on a bit today...sorry....bit tired as I've worked all morning. Think it might be time for a cuppa before the school run and swimming!!!
Will try to perk up for next time :-)
This is not where you HAVE to perk-up... this is where you can be low and get some virtual hugs ((((((((((D)))))))))) to see you through those spots. It is a hard, hard row to hoe this MM stuff. Hardest (obviously) on the individual, hard on the primary care giver, hard on the families and hard on the friends.
ReplyDeleteIt is normal to be anxious, and especially around your birthday... HAPPY belated BIRTHDAY wishes, Deb! Perhaps more readers will comment for you so you don't feel so out-in-the-garden-working-alone and one last bit - do try to live today.
As a lifetime worrier and planner, I have struggled with this issue of living in the day, so I know the challenge it represents. But today is the gift, that is why it is called 'the present.' And I wish for you many more 'presents' on this special birthday.
My first attempt at harvesting was an abysmal failure - really they did sod all. And I remember sitting there for a second when we were discussing it and having one of those out of body experiences, like you're hearing it but it's not really you it's about. But we got funding for Plerixafor and obviously that was a success. I am a bit of a control freak but and I know it is contradictory I am laid back with it however if you're not it's hard to not keep looking at what's next? But sometimes you just have to go with the flow, you're obviously really well informed and that's all you can be because worrying about tomorrow today doesn't make it different.
ReplyDeleteAnd you feel free to rant and rave as much as you want here - it's your blog! :D